Burning on right side of neck and jawline..

besides many many other symptoms i have started to notice lately that early in the mornings right after i wake up i get a burning sensation on my right side of the neck and the jawline this is one of my newest symptoms, aside from brain fog, feeling like there's something in my brain moving around like bees, face gets numb and it goes away, sometimes i feel like im going to have a seizure but it goes away like two seconds after, IBS problems, burning lips, swollen tongue with teethmarks around it, photophobia, phonophofia, needles in the bottom of my left foot, and in my middle finger on left hand by the way MRI showed brain demyelination on the left side of brain strange how everything is on the left side except for the burning on the right side of neck..i have been feeling all of these and many more symptoms some new some that i have had for a few months it's been almost 6 months since i started to feel sick but i don't feel tired and i have a very demanding job where 80% of the time i have to be doing some physical activity, i do sleep a lot more then what i used to but i don't feel really tired to the point where i can't go to work, im starting to wonder if it really is xmrv because i hear most people get really really tired and have a flu like illness which i haven't had, but then again if it is xmrv i got infected back in May which would mean it is at a very very early stage which would probably explain why i don't feel tired..

hi roma you say that your MRI shows demyelination and your discribing what sounds like neurological symtoms, you also say that you don't feel tired to the point that you can't work. Severe fatgue to the point that you can't work is the number one symptom of CFS. So it dosen't look like it is CFS. My advice would be to get a second opinion from a neurologist about your MRI result and neurological symptoms and not worry about CFS until you've got that properly investigated. i don't know to much about Demyelination but here's a link about it which may help http://spinwarp.ucsd.edu/NeuroWeb/Text/br-840.htm all the best

Just a thought, if you can spare the money, you might go ahead and get an XMRV serology test. If it's negative, you can perhaps feel slightly more confident looking for other causes besides CFS, but it won't rule out CFS by any means. If it's positive, you may have an explanation for some of your symptoms because the virus seems to be highly neurotrophic.

So much is not known about CFS and XMRV so everything I just wrote could be wrong, but that's what I would do in your situation if I had the money to spare, but that doesn't mean anything since I am not a healthcare professional.

What leads you to think you might have CFS anyway? If you don't mind my asking, that is.

erm...severe fatigue the number one symptom of CFS? I'm not an expert on CFS but it's only a secondary symptom of M.E. (for me) - which is alledgedly the same thing - neurological issues are far more disabling - the physical side on it's own wouldnt be enough to stop me from working - tho it would limit the sort of work I could do quite a bit - the not being able to think, remember things, learn, solve basic problems (like make coffee), figure out how to operate a sock in a reasonable timespan, remember how doors work - or even what there function is, remebering what roads are and why it's important to avoid the shiny wizzy things etc. etc. etc. are all far more disabling

simply not having a body that works for more than a few minutes at a time is trivial in comparision - as practically any task can be broken down to sub tasks and those can be broken down further etc. - of course this requires a certain amount of planning, memory and co-ordination - if your brain works you can think your way through most situations - but if it doesnt your stuffed

assuming fatigue was an issue which it isnt - fatigue feels great compared with how I feel most days - it may be an analogue of fatigue but it isnt fatigue in the same way as a stubbed toe isnt the same as a sharkbite - both hurt but there's probably a small difference in the sensation (and the effect) - assuming that because someone says it 'hurt' they are the same sensation would be an error

so fatigue - number one symptom of CFS - if you stretch the definition of 'fatigue' to breaking point then it's A symptom - probably an almost universal one - but the main one?

not in my opinion

roma
no one knows for certain atm but it looks like that most people who are xmrv+ do not feel tired significantly more than people who arent - according to the info I have read far more people are likely to have xmrv than have ME/CFS and as far as I know they are all fine (within a normal usage of the word fine anyway) - afaik you have a greater than 90% chance of not having xmrv unless you meet the canadian concensus criteria for ME

I'm not a medical person but your symptoms sound like they are possibly neurological in origin (I know almost nothing about MRI's but I'm surprised they have the resolution to see demylination directly) and some do sound like seizure related events

What rlc says suggests sounds like good advice: if you have evidence of demyelination on your MRI and neurological symptoms you have something very definite to go on there, and there are probably lots of neurological conditions to be explored, that could take some time. If you are lucky, they will eventually find out what you have and you can look forward to getting some treatment. So I'd agree: press on with the neurologists.

I'm not quite sure if it's accurate to say that fatigue is an essential symptom for CFS. Post-Exertional Malaise (feeling worse after exercise) is considered by many to be necessary for a diagnosis, but I seem to recall reading that under some interpretations there are some people who have all the other cardinal symptoms of CCC CFS but not fatigue or PEM. So I would personally hesitate to say that you can't have CFS if you don't have fatigue...especially while we don't really know what 'CFS' actually is anyway...although it would certainly be unusual not to experience fatigue and PEM.

It's also important to note that if you are in the very early stages (less than 6 months) then there are different models of disease progression to take into account. Although most people can identify an acute viral onset, others can't, and some people with CFS do experience a gradual onset rather than a sudden one. From the accounts I've read, experiences in the first year or two can vary quite a bit.

One thing that I did wonder about, reading your post, is that you feel this pain on one side of your face after waking up. Is it possible that you are sleeping on that side - with that side of your face against the pillow? One thing that I discovered quite early is that I don't turn over in the night: I sleep the whole night in the same position. It was so unexpected that I didn't notice this for a long time, and didn't believe it until I had proved it to my own satisfaction, but I don't move at all while I'm asleep. I also get burning pain when my skin's in contact with something to provokes a reaction. So I'm wondering if the burning on your neck and jawline could be caused by lying all night on something, maybe?

Finally, your mention of "swollen tongue with teethmarks around it" rings a bell. Could these be the "crimson crescents" I wonder? Search this forum for "crimson crescents" for a discussion about them.

hi roma you say that your MRI shows demyelination and your discribing what sounds like neurological symtoms, you also say that you don't feel tired to the point that you can't work. Severe fatgue to the point that you can't work is the number one symptom of CFS. So it dosen't look like it is CFS. My advice would be to get a second opinion from a neurologist about your MRI result and neurological symptoms and not worry about CFS until you've got that properly investigated. i don't know to much about Demyelination but here's a link about it which may help http://spinwarp.ucsd.edu/NeuroWeb/Text/br-840.htm all the best

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If a do have XMRV i got it back in May trough sex the reason i have been searching for an anwser it's because ever since may i have been sick and i know i got something infectious and i already tested for all the other stds know to man including HTLV1/2 HIV1/2/O so the only logical explanation is XMRV if it was something else my body would have cleared it by now since it's a fairly new infection this is probably the reason why i don't feel tired yet..